Seven of the silliest things doctors say to ME patients

1. “The most important thing you have to do is to keep having sex with your boyfriend so that he doesn’t leave you.”

2. “Is it that your bed is more comfortable?” — A neurologist after patient told him that I was mostly bed-bound.

3. If you only had children, you’d find your “get up and go”  

4. (To thirteen year-old) - Your excruciating pain is probably caused by your bra strap.

5. What you really need is rest and exercise

6. If you just did the right form of yoga…

7. Your illness is a psychosomatic manifestation which mirrors the symptoms of your father’s brain cancer (from which he died 9 years previously).

(and counting – submit yours here)

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My Health Story and Painting!

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Advice from an Idiot.

As I sit here typing, I am experiencing quite a bit of my heart arrythmia. It’s usually a pretty good sign that I am not doing too great, and have probably been over doing it in general. Will that stop me writing? No. Why? Because I’m and idiot.

It is that kind of idiotic stubbornness that got me where I am today. Refusing to acknowledge that I was getting sicker and sicker, I continued life as normal. Digging a bigger and bigger hole for myself. And now I will never be able to climb back out.

I actually said the words ‘I am sick of being sick, so I am just going to ignore it’. Yes. That. Stupid. In my defence, I had always recovered from illness before, so had every right to assume that I would this time too. Of course, I didn’t.

So, as far as I am concerned, the number one message we need to get out there is. Stop! If you have ME or CFS, don’t continue! Even if a smug looking doctor tells you too. Guess what? You actually do know better than them this time. If they tell you to exercise, the only running you should do is AWAY FROM THEM! The number one rule is REST.

Then your hole might not get so deep. You might actually be able to climb out of it one day. Send me a postcard when you do.

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ME has assaulted me body, mind, and spirit.
There is NO way that ME has not effected my life. It has left me sick in body, mind and spirit, in financial despair, and with failing relationships.  I have just been trying desperately to claw my way through life minute by minute. I have FINALLY after years (15 years) of worsening illness, found an advocate and someone that believes me. I have been outrageously ill for about 5 years now, and in severe pain, financially ruined and have very nearly lost my marriage of 30 years. My family doubts my illness as I have been to close to 50 doctors and they choose to believe “the experts”. Every one of the doctors I have seen has dismissed me, the great majority have either flatly told me that there was nothing wrong, or intimated that I had psychological problems. This illness has deeply affected my finances, I am now on full disability and can no longer work outside of the home.
I finally found a doctor, in Michigan (I am in Ohio), last week, that did the proper tests and found numerous viral and bacterial illnesses including Herpes Zoster (the shingles virus), Lymes disease, Pneumononia, and Epstein Barr. A cardiac condition was found, and unfortunately an inherited condition that has made my immune system unable to fight off these illnesses (Immunoglobulin deficiency and very low white blood counts- IgG l and IgG lll). 15 years prior to the illness I had been diagnosed with fibromyalgia, but despite it was extremely active, athletic, and vibrant. I have been through massive depression, guilt over what I have done to my husband and family (and friends), and have had suicidal ideations nearly every single day. I share the same litany of symptoms that effect every aspect of the body and mind and yes, spirit; paralyzing muscle and nerve pain, and have been using an electric mobility scooter for about 15 years now. In addition from the delayed diagnosis and lack of treatment, my heart is now effected with supra ventricular tachycardia. Additionally I have a 20 degree scoliosis (curvature of the spine) has now progressed to 60 degrees caused by bone weakening and inactivity, and the terrible physical toll that the illness has caused.
The doctor that I am now going to is A. Martin Lerner, M.D., P.C., M.A.C.P.- Clinical Professor of Internal Medicine, Wayne State University School of Medicine, Internal Medicine, Infectious Disease Consultant- from Beverly Hills, MI. I also Skype consulted with Dr.Derek Enlander a couple of months ago- but could not physically see him in person because of driving limitations and distance. When I consulted with him via Skype and he mentioned this “ME”- which I had never heard of before. I have been taking the hepapressin injections from Dr. Derek Enlander for several months now and I have had no improvement whatsoever. I am sure that if I had been able to see Dr. Enlander in person, and become “real” patient, as opposed to a Skype patient, he would have been able to order appropriate tests and offer additional treatment options. Dr. Lerner is a more “doable” distance, only about 3 hours from my home. Dr. Lerners plan of action for me will be high doses of anti biotics and anti virals, along with IVIG (IV Immuno-globulin treatments). Oh, and heart medication to address my SVT. Any way, this is where I am at, I finally have some semblance of vindication, and now have a little bit of hope, although I am so sick and in such a weakened state now, I don’t know how much hope I should have. Thank you for taking the time to read this- and NEVER give up. I think that my gravestone will say “See, I told you I was sick you sons of bitches!!!”….. Here is hoping that I will be able to get my medications, the insurance company does not want to cover my anti virals and it is now in appeal. Just one more battle to fight from my sweat pants and sofa.
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Out of Sight Out of Mind….My friend is a prisoner in his own body.
I created this picture to symbolize that even though we suffer in pain (this is demonstrated through the flame in the eye) we look to the future (the eye looking forwards) , i have then at the bottom written ‘the eye of a fighter’ and included a blue ribbon (the colour associated with M.E and a bird to relate to canary in a coal mine.
-How do you feel misunderstood?
- Since being diagnosed in June 2013 i have had so many people around me create there own definitions of M.E. This is when i started hearing ‘your just tired’ ‘walk it off’ ‘get to bed earlier’ when in actual fact i was in agony and went to bed at 8pm everyday as i couldn’t bare to stay awake any longer. This made me feel the loneliest i have ever felt- i lost all my friends due to not understanding the illness.
Every time i tried to explain to them what it was, i got a snappy comment back telling me it was a sob story or what not. I can now quite proudly say i am no longer friends with these people, and have a group of friends much more understanding. But that does not stop comments i get from people, telling me im not sick because i dont look it- i dont think they relise how much it hurts when they say that.
I think the illness is misunderstood, and is not known widely enough throughout the world. When i heard about Canary in a coal mine i was ecstatic to know someone had finally decided enough was enough and is trying to share their story, and how the illness effect people throughout the world. Thankyou.
From, Kayleigh.

My boyfriend, who has a recognized medical condition, said “There’s a difference between [my condition] which really breaks down the body and [yours,] feeling a little crummy.”

I had an ex say “I don’t believe in fatigue.” When I first got Lyme and could barely leave my house that same ex said he didn’t see the point of walking all the way to my house to hang out there, just because “I had a little headache.” At the time I was too tired to prepare food for myself and had to buy everything pre made since I didn’t have strength to cut food with a knife.

Most people throughout the whole thing seem to think I’m within  striking distance of getting over it all tomorrow if I just “wanted” to.

My boyfriend thought I might just want to be sick or be attached to it and asked me, “If you could push a button and be totally better tomorrow, would you do it?” I said, of course, I’d push the button and be better. I find this question highly offensive. Would you push a button to get over [your recognized medical condition?]. What kind of a question is that? 

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Single piece of advice from infectious disease specialist

After one year of being sick after a bad case of mono an older male infectious disease specialist told me(a younger female patient), “The most important thing you have to do is to keep having sex with your boyfriend so that he doesn’t leave you.”

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Even Chronic Fatigue is a symptom, not a cause

For seven years, I watched doctors from University of Chicago, Mayo Clinic and other educated professionals examine my wife whose health continued to fail as they misdiagnosed one disease after another - chronic fatigue, fibromyalgia and even mental illness.   It was not until we discovered she had Lyme Disease and found a specialist who could diagnose and treat Lyme Disease that we were able to begin the slow but steady process of repairing the physical damage caused by Lyme Disease.   Lyme is regularly misdiagnosed as over 300 diseases, but in fact the diseases are a symptom of Lyme, which is utlimately the cause of the illness being diagnosed.   You won’t get better until you begin treating the Lyme and other co-infections.  You must find a Lyme Literate Doctor to even find someone with the knowledge to run the proper test to diagnose Lyme.   I encourage Jennifer Brea to please not accept your diagnosis of Chronic Fatigue until you have ruled out Lyme.   I have been on your journey with my wife and know how much these misdiagnosis’ can cost you in terms of your health.  

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A good nights sleep

My Doctor, although seemingly sympathetic and had started to run the usual blood tests to eliminate other causes for my symptoms, took me by surprise by saying ” You probably just need a good nights sleep” Oh my, If only I could get a good nights sleep! We need to raise Doctors awareness of this disease. 

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